Here at last!!!

December 17, 2003

Dear RSS/SGA family,

You will have no idea what it's taken to get on this site. It seems

like since convention all I've tried to do is get networked and yet

every technical difficulty known to man has happened. Well, finally

with a new computer (oh my aching credit card) we are here.

My name is Kearns and my son was tentatively diagnosed with RSS

by a Geneticist from the Universtity of Virginia. Connor, (aka

Wombat), is 15 months old and weighs 14 lbs. I don't have an updated

measurement but to put it in mommy language, the child is in 3-6

month old clothing and wears a size two shoe. He just started

walking across the room and he is a holy terror (in the most positive

sense of the word I assure you!) He has 5 teeth and is cutting some

more.

Connor and I attended convention in Chicago and plan on coming back

next Summer. Dr. H. felt that Connor was definitely SGA but was

unsure on the RSS call. Time will tell she said.

Connor's physical issues include Hyperciphosis, GERD, dysphagia, poor

body tone, flat feet, resistance to eating (especially the older he

gets) and reproductive issues. So far no assymetry. We tested

negative for the maternal isomy on chromosome 7. AT convention, many

of the mothers who stopped by to chat noticed that Connor was

an " eater. " We haven't had to G-tube him and feel great relief for

that. However, Connor has only gained 7 ounces since July and

needless to say, I'm a bit worried. From what I've read on this

site, it seems a common occurence for our children to lose weight

twice as fast as they gain it. That has certainly been an issue with

Connor.

Even though we have had to deal with so many unknowns, I feel very

blessed to have a local support network that has done a tremendous

job with Connor even before we knew what we were dealing with. Due

to his failure to thrive diagnosis, we sought out the Early

Intervention program. Connor is now receiving Speech/Oral therapy,

Occupational Therapy and Physical Therapy. We just switched local

Ped's doc's. The guy was nice, but didn't care for early

intervention and wouldn't return phone calls. We felt that it was

important to have a medical team that worked together rather than

opposing. What was ironic was that he told me I had to be my

own " expert " on my son's condtion, but when I insisted on him being

put into early intervention, the Dr. totally balked! As I read the

material provided by Magic and suggested courses of action or tests

to verify if Connor truly was struggling with something, the Dr. blew

it off. Well, we have a new Dr. now and she is heavy into reasearch

and teamwork - Hooray!

I have a few questions to ask the collective wisdom of this group.

1. Connor is on generic Pediasure. He is making the transition from

baby food pureed to table food pureed. I'm having a hard time

getting the same amount of calories in him. With the baby food I

added oil and pudding to boost calories. I can do that with some

table foods but not all. I did find out that Connor can eat Peanutt

Butter without any ill effects. Do any of you have some high calore

and nutritionally dense receipes to share? On one occasion in

Connor's life, he drank an 8 oz bottle. Most of the time he prefers

food to be in 4-5 oz servings whether it be a bottle or baby food.

Anything more and he literally starts gagging and throwing up.

Connor likes food, but has a hard time swallowing it. We are getting

a swallowing study done in January to see if there is any physical

reason for this.

2. Our insurance covers the GHT shot. However, how much does it

really cost per month? I have heard things like it's " 1,000.00 per

shot and it's twice a day until puberty. " Gulp! Even with a 80-20

break down in insurance that is really stiff. If anyone would be so

kind as to update me on costs of the different brands of GHT I would

be greatly indebted(no pun intended).

3. How do you handle people staring at your child? This only just

started happening. I think what freaks people out is that Connor is

the size of an average 5 month old, yet he's walking and saying some

words. He is totally appropriate for a 15 month old! The most

common question I get is, " Was he premature? " For us the answer

would be no. Connor was right on time but terribly small and totally

caught the o.b. off guard. Technically, I know that the form of

dwarfism that the Munchkins had in the Wizard of Oz is not the same

as our syndrome, but I often use that comparison to educate people.

Are there other ways to educate without going into the genetic gobbly-

gook?

In conclusion, I just wanted to let a few people know what a

wonderful impact they had on our lives at convention. To Katy Bradt-

Frissora - Girlfriend you are totally in my prayers - Know and feel

that God is cradling you in His hands. To Salem and her

parents, the Braak's. Y'all are to great for words. I have the most

adorable picture of 's father holding my snoozing son while

we waited to see Dr. H. To the mother from Kentucky who told me life

would get better and that anti-depressants were not a lack of

character but a method of triumphing over a difficult life

situation. I am glad to report that I hung up my Type A, obsessive

compulsive personality with the help of meds. Thank you from the

bottom of my heart.

That's all for now. I apologize if I broke any rules. This is my

first post and I'm not very computer savvy.

Peace to all,

Kearns

Mother to Graham - 6; Cameron 3; and Connor SGA/RSS? 15 months.

December 18, 2003

,

So glad you made it to the list! Your message was great!

As far as Gh goes, it is one shot per day, not two, for most people.

Our insurance covers it totally for us, (medicaide!) If your part of

payment is more than you can afford, some companies have compassion

programs that will help you pay it! (or they will just accept the 80%.

Other than that, I really don't know how much it costs. (I think ours

was about $2,000 per month if we paid out of pocket. It is Humatrope!

But that may be just what they charge medicaide, not regular

insurance.

As far as the staring and questions go, When Storm was Connors age,

people always asked, " How OLD is he? " My husband decided to

be 'smart' and said, " Oh, he's only 8 months, they say he is going to

be a genious. " (When Storm was actually about 18 months old +) As far

as all the other questions, Storm is 8.5 years old now and we are

still asked if he was a preemie. Some days I just don't want to deal

with it and say yes, but most of the time I say No, he just has a

growth disorder which makes him small. and leave it at that!

Well, I hope I answered all your questions! Glad you finally made it

on here!

God Bless,

Carmen, Mom to Paisley, 10y 11m, going on 16, (she is 5 feet tall!!!

Not RSS of course!) and Storm, age 8y 4m, 50 pounds and 47

inches!!!!! He is doing great, accept he started throwing up on a

regular basis again!

December 18, 2003

,

Welcome to the list! Sounds like you are taking great job of

Connor! I applaud you for switching peds! You will definitely need

a doctor who is on your side!

My son is almost 4, and gets one injection a day of Humatrope and it

costs $692/month. We pay just $20/month co-pay. Some folks pay a

percentage, some pay a co-pay and some use compassionate care (I

think Carmen mentioned this). When it comes time for gh, make sure

you find the best option. Sometimes it is covered differently than

other prescriptions in your health care plan (ours is). If you don't

already have one, you should inquire about a case manager with your

insurance company. This way one person handles your son's case.

This will be a lifesaver and make your life much easier.

As far as dealing with strangers, it can be hard. The sight of our

little ones walking is shocking. I remember my son being at the

hospital for a surgery and we were sitting in the lounge, a nurse

commented....he can sit.........I said yes and walk too! He was 20

months old at the time! I have different responses for different

folks depending on how nice or rude they are (our depending on my

mood of the day). Mostly I say when they ask the inevitable was he

premature question, I say no, he has a growth disorder. Then I

follow-up with a positive comment about my son. If someone is rude

(which is rarer as he gets older) I say he has a form of dwarfism.

This shuts people up so quickly!

On a lighter note, I see you went to the Univ. of Va. for a visit to

your son's geneticist. Where are you from? We live in andria.

Alison

> Dear RSS/SGA family,

>

> You will have no idea what it's taken to get on this site. It

seems

> like since convention all I've tried to do is get networked and yet

> every technical difficulty known to man has happened. Well,

finally

> with a new computer (oh my aching credit card) we are here.

>

> My name is Kearns and my son was tentatively diagnosed with

RSS

> by a Geneticist from the Universtity of Virginia. Connor, (aka

> Wombat), is 15 months old and weighs 14 lbs. I don't have an

updated

> measurement but to put it in mommy language, the child is in 3-6

> month old clothing and wears a size two shoe. He just started

> walking across the room and he is a holy terror (in the most

positive

> sense of the word I assure you!) He has 5 teeth and is cutting

some

> more.

>

> Connor and I attended convention in Chicago and plan on coming back

> next Summer. Dr. H. felt that Connor was definitely SGA but was

> unsure on the RSS call. Time will tell she said.

>

> Connor's physical issues include Hyperciphosis, GERD, dysphagia,

poor

> body tone, flat feet, resistance to eating (especially the older he

> gets) and reproductive issues. So far no assymetry. We tested

> negative for the maternal isomy on chromosome 7. AT convention,

many

> of the mothers who stopped by to chat noticed that Connor was

> an " eater. " We haven't had to G-tube him and feel great relief for

> that. However, Connor has only gained 7 ounces since July and

> needless to say, I'm a bit worried. From what I've read on this

> site, it seems a common occurence for our children to lose weight

> twice as fast as they gain it. That has certainly been an issue

with

> Connor.

>

> Even though we have had to deal with so many unknowns, I feel very

> blessed to have a local support network that has done a tremendous

> job with Connor even before we knew what we were dealing with. Due

> to his failure to thrive diagnosis, we sought out the Early

> Intervention program. Connor is now receiving Speech/Oral therapy,

> Occupational Therapy and Physical Therapy. We just switched local

> Ped's doc's. The guy was nice, but didn't care for early

> intervention and wouldn't return phone calls. We felt that it was

> important to have a medical team that worked together rather than

> opposing. What was ironic was that he told me I had to be my

> own " expert " on my son's condtion, but when I insisted on him

being

> put into early intervention, the Dr. totally balked! As I read the

> material provided by Magic and suggested courses of action or tests

> to verify if Connor truly was struggling with something, the Dr.

blew

> it off. Well, we have a new Dr. now and she is heavy into

reasearch

> and teamwork - Hooray!

>

> I have a few questions to ask the collective wisdom of this group.

>

> 1. Connor is on generic Pediasure. He is making the transition

from

> baby food pureed to table food pureed. I'm having a hard time

> getting the same amount of calories in him. With the baby food I

> added oil and pudding to boost calories. I can do that with some

> table foods but not all. I did find out that Connor can eat

Peanutt

> Butter without any ill effects. Do any of you have some high

calore

> and nutritionally dense receipes to share? On one occasion in

> Connor's life, he drank an 8 oz bottle. Most of the time he

prefers

> food to be in 4-5 oz servings whether it be a bottle or baby food.

> Anything more and he literally starts gagging and throwing up.

> Connor likes food, but has a hard time swallowing it. We are

getting

> a swallowing study done in January to see if there is any physical

> reason for this.

>

> 2. Our insurance covers the GHT shot. However, how much does it

> really cost per month? I have heard things like it's " 1,000.00 per

> shot and it's twice a day until puberty. " Gulp! Even with a 80-20

> break down in insurance that is really stiff. If anyone would be

so

> kind as to update me on costs of the different brands of GHT I

would

> be greatly indebted(no pun intended).

>

> 3. How do you handle people staring at your child? This only just

> started happening. I think what freaks people out is that Connor

is

> the size of an average 5 month old, yet he's walking and saying

some

> words. He is totally appropriate for a 15 month old! The most

> common question I get is, " Was he premature? " For us the answer

> would be no. Connor was right on time but terribly small and

totally

> caught the o.b. off guard. Technically, I know that the form of

> dwarfism that the Munchkins had in the Wizard of Oz is not the same

> as our syndrome, but I often use that comparison to educate

people.

> Are there other ways to educate without going into the genetic

gobbly-

> gook?

>

> In conclusion, I just wanted to let a few people know what a

> wonderful impact they had on our lives at convention. To Katy

Bradt-

> Frissora - Girlfriend you are totally in my prayers - Know and feel

> that God is cradling you in His hands. To Salem and her

> parents, the Braak's. Y'all are to great for words. I have the

most

> adorable picture of 's father holding my snoozing son while

> we waited to see Dr. H. To the mother from Kentucky who told me

life

> would get better and that anti-depressants were not a lack of

> character but a method of triumphing over a difficult life

> situation. I am glad to report that I hung up my Type A, obsessive

> compulsive personality with the help of meds. Thank you from the

> bottom of my heart.

>

> That's all for now. I apologize if I broke any rules. This is my

> first post and I'm not very computer savvy.

>

> Peace to all,

>

> Kearns

> Mother to Graham - 6; Cameron 3; and Connor SGA/RSS? 15 months.

December 18, 2003

Hi......my husband puts on an irish accent and says 'she's one of the little

people' !! That shuts them up!!

Eileen..mum to Imogen aged 6 ..wears 12-24mths clothes...

Carmen Snyder stormalc@...> wrote: